Swedish Hospital Visit

Saturday, August 13th through Monday, August 29th 2005.
Monday, August 29th, 2005
Ryli's saturation levels held fine throughout the day, and she was discharged Monday night. Lots of Doctor appointments in the next few days to plan for the coming months.

Sunday, August 28th, 2005
Ryli moved from oxygen to "room air" which means that she was not getting any help breathing, and her saturation levels held fine. One or two days until discharge!

Saturday, August 27th, 2005
Another day of steady progress for Ryli. She went from the VapoTherm to a regular oxygen cannula in the evening.

Friday, August 26th, 2005
Ryli's chest X-ray was the clearest it has ever been however, there was still atelectasis. Dr. Gooding thinks that it is caused by the curviture of Ryli's spine. Ryli was able to move from CCU to the Pediatric floor where her numbers held steady.

Thursday, August 25th, 2005
Todays X-ray showed that Ryli still had atelectasis but that it moved. Nurses and Doctors joke around here that Ryli is the only patient where the atelectasis moves on a day to day basis. They lowered her oxygen and pressure going into her lungs but had to pump the levels up again since Ryli's oxygen level was staying in the 80's. Ryli was wide awake for hours and hours but was scheduled to get Chloral Hydrate to help her rest. The Airway Clearance System (vibrating vest) was bumped from every 5 hours to every 4 hours per treatment. One of the Respiratory Therapists joked that she wasn't sure if Ryli's chest sounded like a Whirlpool or Maytag washing machine. Slowly but surely the vest will work out all of the mucus from Ryli's lungs and chest.

Wednesday, August 24th, 2005
Big day for Ryli!!! Ryli was extubated at about 11:30 am! Her X-ray was more clear, but still not perfect. Because she was extubated we were able to stop her Chloral Hydrate, Ativan, and Morphine. All three of these were used to make her more comfortable while intubated. Among other medications, Ryli was still on Lasix, which helps draw the water out of her body so that her kidneys can process it, this helps her empty her bladder. She was put on IV fluids because of the extubation, but started her goat milk again in the evening. The Vapotherm (a machine that helps give Ryli warm, humid air with some pressure) was set to 60% oxygen, with a pressure of 8. Her stats remained good. Ryli received her vibrating vest today, we hope this will help her get the fluids out of her lungs for a long time to come. We have been working hard to get this vest for a while now, it could be instrumental in keeping her out of the hospital. With a price tag of $16,000 we are really hoping that United Health Care (Ryli's insurance) covers this device.

Tuesday, August 23rd, 2005
Again, Ryli's the X-ray was almost the same, and she has tolerated more reductions on the ventilator. Dr. Gooding was still aiming for a Wednedsay extubation. Dr. Gooding agreed that some of Ryli's lung problems may be associated with her severe spinal curve.

Monday, August 22nd, 2005
Dr. Gooding was happy with Ryli's progress again. Although the X-ray was almost the same, she has tolerated more reductions on the ventilator. Dr. Gooding mentioned Tuesday or Wednesday for extubation, depending on her progress. They also discontinued the Clindomycin (a major antibiotic), which is good news.

Sunday, August 21st, 2005
Dr. Gooding was happy with Ryli's progress. Ryli's lung has cleared up even more on the X-ray, and she tolerated the adjustments to the ventilator relatively well. They had to turn her oxygen back up a couple of times, but she generally moved inthe right direction.

Saturday, August 20th, 2005
Dr. Gooding was the pediatrician on call. She had seen Ryli when she was at Swedish in April, and was great for Ryli. She was impressed with Ryli's progress, and thought that we should continue the schedule for Extubation.

Friday, August 19th, 2005
Happy 18 month Birthday!
Dr. Schmidt was back and let us know that Ryli was progressing slowly, but surely. Her left lung is clearing up a little, and there was more extubation talk. They began turning the ventilator down. In the evening, she was having trouble keeping her oxygen saturation or "sats" up, so her ventilater was turned back up a bit. Extubation is a slow process.

Thursday, August 18th, 2005
PSL Hospital's Pediatric ICU was still full, so we stayed at Swedish again. Dr. Tania Kahn came from PSL to see Ryli today and was very positive. She started looking into a vibration vest to help keep the mucus in Ryli's lungs moving around. This is something that we've wanted for some time, but have had difficulty getting.
Dr. Schmidt was out today, and Dr. Martin Alswang was assigned to Ryli. We discussed the need to move to PSL, and we may not have to end up over there. Since a tracheotomy was starting to look less likely, and the Vibration vest was looking like a possibility, the move was looking like it may not happen. We were shown the latest X-ray and CT scan, showing the liquid in the left lung, as well as the collapse. Ryli performed very well this day, and there was more talk of extubation (removing the breathing tube) than ever before. Also, there was some talk of having Dr Nigel Pashley (Her Ear, Nose and Throat doctor), come over for the extubation so that he could check her throat (for "floppy" airway) at that time.

Wednesday, August 17th, 2005
PSL Hospital's Pediatric ICU was still full. Ryli's move was postponed again, but we are not sure for how long. Dr. Schmidt schedule for Dr. Kahn (a pulmonary specialist) to come visit Ryli on Thursday the 18th.

Tuesday, August 16th, 2005
PSL Hospital's Pediatric ICU was full. Ryli's move was postponed for a day. Today was a "wait and see" type of day.

Monday, August 15th, 2005
This morning Ryli's atelectases seemed worse on the X-ray. She has struggled with her breathing for a while, and they finally decided to intubate her. Dr. Schmidt also wanted to insert a main-line for safer medication. Ryli's anatomy is slightly different than most of us, and seven (7) tries to insert the main-line into her neck were not successful. Dr. Schmidt was able to secure the line into her sub-clavicle region (under the collar bone). Sutures keep this IV in place. This is a longer-term IV - it's very stable, and her vein is much less likely to collapse with it. Good for Ryli.
Dr. Schmidt planned for Ryli to move to PSL (Presbyterian St. Luke's) Hospital first thing in the morning so that she could be closer to the ENT and Pulmonary specialists.

Sunday, August 14th, 2005
Ryli is taking Cerebrex and Dilantum to keep the seizures at bay, while the Tegretol gets up to the required levels. The Tegretol should be the AED (Anti-Epilepsy Drug) for the long term for these seizures. The EEG that she had this morning did not show any seizure activity, just slow brain activity.
Ryli has developed an atelectasis (collapsed lung) on her left side. X-Rays also show a little liquid in her lungs (probably from aspirating her saliva). She has been struggling with her breathing for a while now, but we are letting her try to recover without intubation. Dr. Jeff Schmidt took over for Dr. MacEntee today.

Saturday, August 13th, 2005
Ryli decided to visit the hospital again. She was having trouble breathing, so we called 911 and had the ambulance take us to Swedish Medical Center. On the way to the hospital, she began having full body seizures. She had two (2) of these so far. They are very different than the seizures that she has had in the past. Dr. Mary MacEntee was her doctor in the ER.
Ryli had to have another lumbar puncture (spinal tap) to draw spinal fluid. Ryli was her usual elusive self, and the doctor was unable to draw the fluids correctly after six (6) tries. Then Dr. MacEntee drew the fluid on her first try by shifting Ryli's hip over to account for the curve in her spine.